Bladder Cancer: Jerry’s Story

In April 2004, Jerry Drogin, 65, was out of town on a business trip when he woke up in the middle of the night in pain, went to the bathroom, and saw blood in his urine.

Back at home a few days later, his urologist scheduled a number of tests, including a cystoscopy — a biopsy of bladder tissue performed using a thin, lighted instrument inserted through the urethra. To his great dismay, the results revealed that he had muscle-invasive bladder cancer — an advanced form of cancer in which the tumor penetrates the bladder's lining and grows into the muscular wall of the organ.

When the initial shock of the diagnosis wore off, his urologist urged him to go to Memorial Sloan Kettering Cancer Center. Remembering the moment today, Jerry says, “My doctor explained that they use a surgery that gives people like me a chance to remain active after the cancer is removed.”

Jerry's urologist suggested he might benefit from a neobladder urinary diversion procedure, an approach in which the surgeon removes the bladder and tumor, and then constructs a new bladder from a segment of intestine. The new bladder is connected to the urethra, allowing the patient to urinate normally, and avoiding the need for him to wear an external collection bag.

Taking his doctor's advice, Jerry made an appointment immediately.

First Step — Chemotherapy

Before undertaking surgery for muscle-invasive bladder cancer, however, Memorial Sloan Kettering's bladder cancer treatment team starts patients with several months of chemotherapy. The goal is to kill microscopic tumor cells that may have spread outside the bladder first, increasing the chance of a successful, curative surgery. As Suzen, Jerry's wife of 35 years, recalls, “The doctors explained that even though the cancer appeared to be localized, just in case there was something floating around in the body, the chemo would get it first.”

For those first five months, Beverly Drucker, a medical oncologist specializing in the treatment of bladder cancer, oversaw Jerry's care. “Dr. Drucker guided me through every step that I would go through with chemo,” he says. (Having since left Memorial Sloan Kettering, Dr. Drucker is now a physician at Greenwich Hospital, in Connecticut.)

Jerry handled the five months of chemo very well — the only symptom he experienced was extreme fatigue. As his wife recalls, “Jerry didn't lose his hair. He never threw up. But he would have chemo on a Friday, and on Sunday he would go to sleep and wake up Wednesday.” Laughing, Jerry says, “I would call it a Rip Van Winkle disease!”

A Hug and a Neobladder

Midway through the chemotherapy regimen, Jerry and his wife started to discuss surgical options with Dr. Drucker. Understanding that Jerry still hoped to receive a neobladder, Dr. Drucker recommended that he meet with Memorial Sloan Kettering urologic surgeon Bernie Bochner to discuss his options.

“When he came in, Dr. Bochner asked me what I wanted,” Jerry recalls. “I told him that I needed a big hug and a neobladder. He came over, hugged me, and told me he probably would be able to give me a neobladder.” Dr. Bochner explained that, for a number of reasons, the operation isn't an option for all patients. But having reviewed Jerry's scans, he thought he would be a good candidate.

Jerry confessed that in addition to his fear of having to wear an external collection bag, one of his greatest concerns was whether he would retain sexual potency (the ability to have an erection) after the operation. Instantly setting his mind at ease, Dr. Bochner told Jerry that for many patients, it is possible to perform a nerve-sparing approach to ensure that potency is maintained. He also told him about his colleague, John Mulhall, a urologic surgeon who specializes in sexual and reproductive medicine, who would work with Jerry to restore his sexual function following surgery.

Hearing all of this was such a great relief, Jerry recalls, that “for the first time since the start of my treatment, I cried.”

From that first meeting, Jerry was very pleased with the care he received from Dr. Bochner. “Dr. Bochner, as far as I'm concerned, is one of the most compassionate people I know,” he says. “I consider him a dear friend and a blessing to the medical community.”

The Whole Spectrum of Care

As surgery was nearing, Jerry met with Dr. Mulhall to talk about sexual rehabilitation so he could know exactly what to expect. He found the appointment very helpful: “What Dr. Mulhall did was give me the rays of hope I needed to go into surgery,” he recalls. Jerry recommends that all bladder cancer patients have this conversation with their doctors before surgery because, for him, it made the whole experience less scary.

Around that same time, Jerry and his wife also started attending bladder cancer patient support meetings led by Memorial Sloan Kettering's Richard Glassman, a clinicalsocial worker who specializes in patients with urological (genitourinary) cancers. His wife and four daughters also met individually with Mr. Glassman for private counseling sessions, enabling them to talk openly and ask questions they had been too scared to ask before.

“ [Dr. Bochner] always made me feel that I was his only patient. “

Jerry Drogin

“I know that a lot of people feel that you should not include your children, that you should spare them,” says Suzen. “But 99 percent of the time what goes on in their mind is worse than anything in reality. The girls — the oldest of whom is 44 — were so frightened and overwhelmed, and they each needed their own tools to work with, that they could not get from us.”

Taking advantage of a variety of support services offered by Memorial Sloan Kettering, the whole family felt more in control of the situation and learned ways to communicate with each other about their fears regarding Jerry's cancer.

A Successful Neobladder Operation

When the day of surgery finally came in January, Dr. Bochner was able to perform a nerve-sparing cystectomy and neobladder. During the operation, they tested 45 lymph nodes to make sure that the cancer had not spread beyond the bladder — all were negative.

Jerry's recovery went relatively smoothly, but because the neobladder is made out of a piece of intestine, it can take some time to develop into a functional bladder replacement. With time, the neobladder stretches to hold more urine, enabling therecipient to go longer amounts of time between trips to the bathroom. To help him through those first few months, Jerry says, “Suzen found me a watch that I could set and wear at night, and it would vibrate to wake me.” At first, he set the watch to remind him to urinate every two hours. Later he was able to extend this to every three hours, and even longer after that.

The sexual rehabilitation process, which Jerry began a month after surgery and has continued with to this day, has also been very successful. “Dr. Mulhall has given me everything I wanted,” Jerry says.

Keeping a Positive Attitude

Jerry and his wife Suzen

Throughout his treatment Jerry stayed positive and upbeat — even on days when he experienced long waits to see his doctors. “On days that I had a clinic visit, I came for the entire day,” says Jerry. “I can't say it enough that when you go to clinic, bring a book or anything to keep you occupied so that you don't become impatient. When they kept me waiting, it meant that Dr. Bochner was seeing someone who needed the care more urgently than I did. When it was my turn, it would be my turn, and I never looked at my watch. He always made me feel that I was his only patient.”

To show his appreciation for the people working in the clinic, Jerry always brought a big box of cookies as a way of saying thank you for all they were doing for him. Echoing her husband's sentiment, Suzen says, “I cannot say enough about the caliber of the staff, the attitude of everyone — and I'm talking about the porters on up.”

Recovery & Beyond

Two months after Jerry's neobladder surgery, just as he and his family were easing back into their lives, Suzen was diagnosed with breast cancer, and the caregiver roles reversed. Having just been through Jerry's bladder cancer, the whole family was better equipped to handle Suzen's diagnosis and subsequent treatment. Although it took more than a year, her treatment was successful, and life has finally returned to normal.

Jerry's self-described role as “Sloan's Poster Patient” did not end with his treatment. Since then, Dr. Bochner tapped Jerry to become a patient-to-patient volunteer, a role that allows him to talk about his experience and share advice with other men and women. Richard Glassman also refers patients to Jerry and Suzen, which has been very meaningful for them.

In the summer of 2009, Dr. Bochner invited Jerry to be one of the keynote speakers at the Bladder Cancer Advocacy Network (BCAN) national meeting in Jackson Hole, Wyoming. (BCAN is an organization whose mission is to increase public awareness about bladder cancer; to advance bladder cancer research; and to provide educational and support services for the bladder cancer community.) In addition to clinicians and patients, the audience included basic science researchers. Jerry and Suzen enjoyed the experience so much that they plan to go back next year.

Now cancer-free for five years, Jerry expresses deep gratitude for Dr. Bochner, who has given him so much. “To you, Bernie, you modest man, thank you,” he says. “Thank you for being my doctor and my friend. You are always there when I need you.”

biopsy (BY-op-see)

The removal of cells or tissues for examination by a pathologist. The pathologist may study the tissue under a microscope or perform other tests on the cells or tissue. There are many different types of biopsy procedures. The most common types include: (1) incisional biopsy, in which only a sample of tissue is removed; (2) excisional biopsy, in which an entire lump or suspicious area is removed; and (3) needle biopsy, in which a sample of tissue or fluid is removed with a needle. When a wide needle is used, the procedure is called a core biopsy. When a thin needle is used, the procedure is called a fine-needle aspiration biopsy.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

bladder (BLA-der)

The organ that stores urine.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

bladder cancer (BLA-der KAN-ser)

Cancer that forms in tissues of the bladder (the organ that stores urine). Most bladder cancers are transitional cell carcinomas (cancer that begins in cells that normally make up the inner lining of the bladder). Other types include squamous cell carcinoma (cancer that begins in thin, flat cells) and adenocarcinoma (cancer that begins in cells that make and release mucus and other fluids). The cells that form squamous cell carcinoma and adenocarcinoma develop in the inner lining of the bladder as a result of chronic irritation and inflammation.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

blood (blud)

A tissue with red blood cells, white blood cells, platelets, and other substances suspended in fluid called plasma. Blood takes oxygen and nutrients to the tissues, and carries away wastes.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

breast (brest)

Glandular organ located on the chest. The breast is made up of connective tissue, fat, and breast tissue that contains the glands that can make milk. Also called mammary gland.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

cancer (KAN-ser)

A term for diseases in which abnormal cells divide without control and can invade nearby tissues. Cancer cells can also spread to other parts of the body through the blood and lymph systems. There are several main types of cancer. Carcinoma is a cancer that begins in the skin or in tissues that line or cover internal organs. Sarcoma is a cancer that begins in bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue. Leukemia is a cancer that starts in blood-forming tissue such as the bone marrow, and causes large numbers of abnormal blood cells to be produced and enter the blood. Lymphoma and multiple myeloma are cancers that begin in the cells of the immune system. Central nervous system cancers are cancers that begin in the tissues of the brain and spinal cord. Also called malignancy.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

caregiver (KAYR-gih-ver)

A person who gives care to people who need help taking care of themselves. Examples include children, the elderly, or patients who have chronic illnesses or are disabled. Caregivers may be health professionals, family members, friends, social workers, or members of the clergy. They may give care at home or in a hospital or other health care setting.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

chemotherapy (KEE-moh-THAYR-uh-pee)

Treatment with drugs that kill cancer cells.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

clinical (KLIH-nih-kul)

Having to do with the examination and treatment of patients.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

counseling (KOWN-suh-ling)

The process by which a professional counselor helps a person cope with mental or emotional distress, and understand and solve personal problems.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

curative surgery (KYOOR-uh-tiv SER-juh-ree)

An operation to remove cancerous tissue. Part or all of the organ or tissue in which the cancer started and a small amount of healthy tissue around the cancer is removed. Nearby lymph nodes may also be removed. Curative surgery may be used as primary therapy for localized cancer and is often followed by chemotherapy or radiation therapy to kill any cancer cells that remain.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

cystectomy (sis-TEK-toh-mee)

Surgery to remove all or part of the bladder (the organ that holds urine) or to remove a cyst (a sac or capsule in the body).

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

cystoscopy (sis-TOS-koh-pee)

Examination of the bladder and urethra using a cystoscope, inserted into the urethra. A cystoscope is a thin, tube-like instrument with a light and a lens for viewing. It may also have a tool to remove tissue to be checked under a microscope for signs of disease.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

diagnosis (DY-ug-NOH-sis)

The process of identifying a disease, such as cancer, from its signs and symptoms.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

Ensure (en-SHER)

A nutritional drink that may help people who cannot get everything they need in their diet from foods and other drinks. It may be taken by mouth or given through a small tube inserted through the nose into the stomach or the small intestine. It may also be given through a small tube that is put into the stomach or intestinal tract through an opening made on the outside of the abdomen. Ensure is a type of dietary supplement. Also called polymeric enteral nutrition formula.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

fatigue (fuh-TEEG)

A condition marked by extreme tiredness and inability to function due lack of energy. Fatigue may be acute or chronic.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

follow-up (FAH-loh-up)

Monitoring a person's health over time after treatment. This includes keeping track of the health of people who participate in a clinical study or clinical trial for a period of time, both during the study and after the study ends.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

intestine (in-TES-tin)

The long, tube-shaped organ in the abdomen that completes the process of digestion. The intestine has two parts, the small intestine and the large intestine. Also called bowel.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

localized (LOH-kuh-lized)

Restricted to the site of origin, without evidence of spread.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

lymph (limf)

The clear fluid that travels through the lymphatic system and carries cells that help fight infections and other diseases. Also called lymphatic fluid.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

medical oncologist (MEH-dih-kul on-KAH-loh-jist)

A doctor who specializes in diagnosing and treating cancer using chemotherapy, hormonal therapy, biological therapy, and targeted therapy. A medical oncologist often is the main health care provider for someone who has cancer. A medical oncologist also gives supportive care and may coordinate treatment given by other specialists.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

medicine (MEH-dih-sin)

Refers to the practices and procedures used for the prevention, treatment, or relief of symptoms of a diseases or abnormal conditions. This term may also refer to a legal drug used for the same purpose.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

microscopic (MY-kroh-SKAH-pik)

Too small to be seen without a microscope.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

nerve-sparing surgery (nerv-SPAYR-ing SER-juh-ree)

A type of surgery that attempts to save the nerves near the tissues being removed.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

Network

A group of physicians, specialists, hospitals, outpatient centers, pharmacies, and other providers who has signed a contract with an insurance company to provide healthcare services to their subscribers.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

organ (OR-gun)

A part of the body that performs a specific function. For example, the heart is an organ.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

physician (fih-ZIH-shun)

Medical doctor.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

recipient (reh-SIH-pee-ent)

In medicine, a person who receives blood, cells, tissue, or an organ from another person, such as in a blood transfusion or an organ transplant.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

regimen (REH-jih-men)

A treatment plan that specifies the dosage, the schedule, and the duration of treatment.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

rehabilitation (REE-huh-BIH-lih-TAY-shun)

In medicine, a process to restore mental and/or physical abilities lost to injury or disease, in order to function in a normal or near-normal way.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

social worker (SOH-shul WUR-ker)

A professional trained to talk with people and their families about emotional or physical needs, and to find them support services.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

surgeon (SER-jun)

A doctor who removes or repairs a part of the body by operating on the patient.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

surgery (SER-juh-ree)

A procedure to remove or repair a part of the body or to find out whether disease is present. An operation.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

symptom (SIMP-tum)

An indication that a person has a condition or disease. Some examples of symptoms are headache, fever, fatigue, nausea, vomiting, and pain.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

tissue (TIH-shoo)

A group or layer of cells that work together to perform a specific function.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

tumor (TOO-mer)

An abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancer), or malignant (cancer). Also called neoplasm.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

urethra (yoo-REE-thruh)

The tube through which urine leaves the body. It empties urine from the bladder.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

urinary (YOOR-ih-NAYR-ee)

Having to do with urine or the organs of the body that produce and get rid of urine.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

urine (YOOR-in)

Fluid containing water and waste products. Urine is made by the kidneys, stored in the bladder, and leaves the body through the urethra.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)

urologist (yoo-RAH-loh-jist)

A doctor who specializes in diseases of the urinary organs in females and the urinary and sex organs in males.

Source: The National Cancer Institute's Dictionary of Cancer Terms(http://www.cancer.gov/dictionary)